Blood Work Says All Clear

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Last week was my first posting in regards to my daughter Fiona. I was certain that I had finally found an answer for her erratic behavior. I still have her on a gluten free diet and have been really careful with candy, processed sugars and anything that would be bad for her. I just got a call from the doctor today and she said all of her blood work came back clear. From what I have been told on this forum, the blood results are not reliable. I absolutely love our peditrician but I am not convinced that she is well versed on this topic. I am not well versed on this topic. I feel like I am the blind leading the blind. I saw such a HUGE change in her behavior from going gluten free. Another thing is that the blood tests were done after a week of being gluten free, could this have skewed the results? We also had some other set backs over the weekend b/c my husband and I went out of town and left the kids with family. Before we left, I was so excited about having a happy little girl after 3+ long years and then we came back to wierd, grouchy Fiona. I know that sounds mean but this is all so discouraging.

She woke up last night in the middle of the night crying. My husband went up to see if she was ok and he said she looked possessed and kept trying to kick him in the face. She seems to have no reccollection of waking up. Does anyone else experience this with their children?

Any suggestions are welcomed!

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Interests:Jesus Christ, medical research, reading, playing my recorders (musical woodwind instruments), my 21 grandchildren, knitting, card making, playing computer games.
I love playing classical music on my recorders (I have a collection of expensive wooden ones, from sopranino to tenor), but also medieval dance music, Irish music and anything that is cheerful and is a challenge to play.
I have a lot of hobbies, and I do them in cycles. I can't do too many things at once or I get very frazzled, thanks to Asperger Syndrome.
I was diagnosed with chronic Lyme disease in June 2015.

It sure sounds like Fiona was glutened on the weekend. There is nothing you can do but wait for the effects to wear off. It can take up to two weeks before she is back to her own sweet self.

Yes, I had kids cry during the night, but not really being awake and being mean, not recognizing me. I think it is another sign of glutening. My grandchildren would do that too, and sleepwalk. Since all my oldest daughter's kids have been gluten-free, those problems have stopped (she has five kids, all gluten-free now, and two have had amazing improvements).

I know some of my kids are gluten intolerant, too, but most of them won't even look at that.

I hope Fiona will be back to normal soon. If you have seen huge improvements on the gluten-free diet, you really have your answer. And yes, being gluten-free for a week before tests may have messed with the results.

You can always still go with Enterolab, they can also tell you about other intolerances.

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It sure sounds like Fiona was glutened on the weekend. There is nothing you can do but wait for the effects to wear off. It can take up to two weeks before she is back to her own sweet self.

Yes, I had kids cry during the night, but not really being awake and being mean, not recognizing me. I think it is another sign of glutening. My grandchildren would do that too, and sleepwalk. Since all my oldest daughter's kids have been gluten-free, those problems have stopped (she has five kids, all gluten-free now, and two have had amazing improvements).

I know some of my kids are gluten intolerant, too, but most of them won't even look at that.

I hope Fiona will be back to normal soon. If you have seen huge improvements on the gluten-free diet, you really have your answer. And yes, being gluten-free for a week before tests may have messed with the results.

You can always still go with Enterolab, they can also tell you about other intolerances.

I cannot thank you enough! You seem like an amazing person just in the 2 responses you have given me. I absolutely will keep our household gluten free and I am still convinced that this is the problem. Did any of your children or grandchildren exhibit OCD tendencies? She definitely has exhibited some in the past and again after the weekend. By the way, how in the world are you coping with being a GERMAN celiac!?!?!? I love German food!

Thanks again for all your great input!

Kathleen

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Your daughter sounds just like my son 2 years ago. He tested negative on all the tests, but we took him off gluten anyway. He's a different kid now. Not all problems with gluten are Celiac Disease, so Fiona could have non-Celiac gluten intolerance, which can be just as serious, but won't show up on traditional tests. You could try Enterolab or just go with what you've seen from her dietary response.

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Interests:Jesus Christ, medical research, reading, playing my recorders (musical woodwind instruments), my 21 grandchildren, knitting, card making, playing computer games.
I love playing classical music on my recorders (I have a collection of expensive wooden ones, from sopranino to tenor), but also medieval dance music, Irish music and anything that is cheerful and is a challenge to play.
I have a lot of hobbies, and I do them in cycles. I can't do too many things at once or I get very frazzled, thanks to Asperger Syndrome.
I was diagnosed with chronic Lyme disease in June 2015.

I cannot thank you enough! You seem like an amazing person just in the 2 responses you have given me. I absolutely will keep our household gluten free and I am still convinced that this is the problem. Did any of your children or grandchildren exhibit OCD tendencies? She definitely has exhibited some in the past and again after the weekend. By the way, how in the world are you coping with being a GERMAN celiac!?!?!? I love German food!

Thanks again for all your great input!

Kathleen

Well, since I am from the north of Germany (Hamburg), I am just fine. They eat all those noodle foods in the south mostly. But I do miss my cakes. And I almost cried when I was in Germany during the summer, and saw those amazing rolls they make, and this time I had to walk past them! That was always one of the things I really looked forward to when visiting my siblings in Germany, to have several different kinds of fresh rolls for breakfast. But hey, I survived.

Yes, I believe that I have seen OCD tendencies in some of my kids and grandkids. But I was assuming that is just part of their genes, since I have Asperger Syndrome and Tourette Syndrome, and they both inevitably come with OCD tendencies. But maybe it was the gluten all along, I don't know.

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Your daughter sounds just like my son 2 years ago. He tested negative on all the tests, but we took him off gluten anyway. He's a different kid now. Not all problems with gluten are Celiac Disease, so Fiona could have non-Celiac gluten intolerance, which can be just as serious, but won't show up on traditional tests. You could try Enterolab or just go with what you've seen from her dietary response.

Thank you Liz! I get so discouraged when I just rely on conversation with family in regards to this topic. They just don't know enough and have not researched any thing about gluten intolerance or Celiac Disease. I cannot believe what a relief it is to talk to people, like yourself. I start to regain confidence in my self diagnosis for Fiona.